I Nailed It? With a Sledgehammer?


Oh, dear.  I won’t even link to it.  It’s taken me hours to get through it in my obscenely, cognitively impaired state.  It’s pretty huge, anyway.  Yep.  The NCSE! That’s Non-Convulsive Status Epilepticus if you haven’t seen it on my blog.

Wow.  Neurology’s tough to figure, but oh my god.  I really want to throw up now.  And not just because of my “regular” post-“ick”tal© signs and symptoms.  From what I just read, I think I want to cry now, too.  Although, maybe it’s still good I figured it out? Maybe it can still be controlled? This massive paper that is SO on target.  Oh, holy hell.  The guy even has a syndrome named after him.  Huh?

I’m not post-“ick”tal© at all.  I mean, well, hang on.  Bear with me as apparently I’m kind of on the extreme end of things.  That’s why I get so messed up when it all happens.  I sort of knew that already, though.  It’s all been so muddled in my head (literally haha!) The NCSE is so muddled, too.

Well, I don’t think I need to bother looking at the calendar anymore.  Tracking my cycle seems pretty irrelevant, now.

Typical absence status epilepticus. It’s actually listed: Catamenial onset.  Prior to finding this, everywhere I was going earlier? Confirmed.  Seizures all over the place regarding periods, ovulation, peri-, post-…hey, anytime estrogen, progesterone and so many other hormones decide bounce around!

Back to the paper.  There’s more!

Some things may have a lesser presentation (my myoclonic leg jerking) and some that he doesn’t mention at all (my motor impairment that can get kinda crazy at times.)  Hello, Wonder Cane and his brother! Maybe really for safety so I don’t friggin’ bang into something and fall.  I get so dizzy I become a freakazoid, klutzy nightmare.  I don’t have any muscle weakness, though.  That’s the (non-)presentation.

Past history of absence seizures? Ah, who the hell knows? Nobody paid attention when I told them about my Simple partials when I was six-years-old! Maybe I had absence seizures, too!

It can also start when I wake up.  Check! Other seizures have occurred prior in life.  Check! Idiopathic generalized epilepsy.  Oh, sure.  Check! I don’t think anyone knows what to call it anymore!

So.  The Boo Hoo News? Well, apart from it totally sucking, how do we deal with this beast?

HRT has been suggested by other people in the epilepsy world for catamenial seizures but please! They found out pretty quickly that monkeying around with hormones just made things worse! Uh, yeah.

Let’s head back to proper treatment of epilepsy.  I was heading in the direction of my Clobazam/Frisium which is good for catamenial stuff, but maybe not if now we’ve drilled down to absence seizures? Still, maybe worth a shot.  A biggie for absence seizures is good ol’ Depakote/Sodium Valproate.  This is a Good News/Bad News/Who Knows What News.  Also, another damn med?

Good News: It might work nicely with my Lamictal/Lamotrigine.  Depakote takes Lamictal and shoots it to the moon (and eventually) back.  Check this.  My Lamictal elimination half life would go from 26hrs to 70hrs! But a baby dose of the Depakote? Because the Lamictal has shut down basically everything! It’s just this damn NCSE!

Bad News/Who Knows What News: Depakote and my Topamax/Topiramate! I could get into some funky hypothermia, hyperammonemia (too much ammonia in my blood) uh…okay.  Again, baby dose? Depakote can be a pain in the arse, anyway, as sometimes you may need blood draws.  Still, baby dose?

Keppra? Oh, enough.  And yes, I called Non-Arsey Neuro.  Appt. booked.

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  1. Hi patientanonymous, I see you’re here to say something about your own post.

    Yep, I sure am! I’m reading all of those journal articles I downloaded. I’ve taken another Gravol so it should take a while. I shouldn’t be on my computer, though. My head hurts and that stupid photophobia. It’s bloody annoying. All of this is. Harrumph!

    Sure enough, I found motor issues with Typical absence status epileptics. Non-Arsey Neuro and I are gonna have a pretty interesting appt., methinks.

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  2. I sure hope you find a solution, PA. I feel for you. My sister had epilepsy as a kid and she was VERY unhappy with the situation. For her, she either ‘grew out of it’ (as some doctors say childhood epilepsy does not always follow into adulthood), or… I sometimes wonder about the terrible car accident she had where she sustained massive head injuries in her mid teens. Sometimes I wonder if it somehow did something to the part of her brain that was causing the epilepsy and that is why she never had another seizure. Or something like that. I know before the accident the doctors did locate scar tissue in her brain as the likely culprit (though no one could say how it got there – but I have a reasonable guess as my father was a violent, asshole). I dunno too much about this topic in general, though. Not a doc. But I do wish you the very best.

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  3. Hi Ethereal Highway. Good to see you. Thank you so much as well for hope in finding a solution. I’m thinking it might be a little tricky and it might also take a bit but I don’t care! This is too much!

    I’m still all screwy and this is day three? With the NCSE I’m usually sick for four days. I have to go out and do stuff, too!

    Yes, seizures can “stop” after childhood as one moves into their teen years. Mine did, as well. However, they came back in my early 20s or so? That is also true. They can come back!

    That’s kind of interesting about your sister (although not a great story!) Scarring of the hippocampus is largely responsible for MTLE (Medial Temporal Lobe Epilepsy.) Well, not “largely?” It pretty much is. Sustained head injuries or TBIs may bring it on, so kind of a curious thought about a head injury stopping it. Maybe just bizarre timing? I don’t know.

    Other physiological brain damage factors in too, of course. That is the purpose of an MRI. It looks for any other things of that nature. Scarring. Cancer. Evidence of some kind of damage. It is possible to develop scarring later on.

    Then you’ve got the EEGs that track wave activity that can show patterns indicative of…something? Still, so unreliable as it’s hard to “catch” a seizure in action.

    Then you’ve got so many other things that can lower thresholds. I won’t even bother to list them! Thank you again for the hope and your thoughts.

    Take care,
    PA

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  1. 1 And the Winner for Typical Absence Status Epilepticus is… « Patient Anonymous: Just Another Head Case

    […] went to see Non-Arsey Neuro yesterday.  There was no argument with my findings.  I covered a fair amount of what we discussed in that link, but in terms of presentation, […]

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